Lifelong enzyme therapy continues for hunter syndrome patients in Post-Trial access program
NCT ID NCT05795361
First seen Apr 21, 2026 · Last updated May 13, 2026 · Updated 4 times
Summary
This program offers continued access to idursulfase-IT (TAK-609) given directly into the spinal fluid, along with intravenous Elaprase, for children and adults with Hunter syndrome who have cognitive impairment. Participants must have completed one of two earlier studies. The goal is to maintain treatment for those who continue to benefit, as there is no cure and lifelong management is needed.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Ann and Robert H Lurie Childrens Hospital of Chicago
AVAILABLEChicago, Illinois, 60611, United States
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Board of Regents of the University of Nebraska
AVAILABLEOmaha, Nebraska, 68198-5450, United States
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Division of Medical Genetics, University of Utah
AVAILABLESalt Lake City, Utah, 84112, United States
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H.C.U. de Valladolid
AVAILABLEValladolid, 47003, Mexico
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Hospital Universitario Reina Sofia
AVAILABLECórdoba, 14004, Spain
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Instituto Nacional de Pediatria
AVAILABLECoyoacán, Mexico City, 4530, Mexico
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Jackson Memorial Hospital University of Miami
AVAILABLEMiami, Florida, 33101, United States
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Joseph M. Sanzari Children's Hospital
AVAILABLEHackensack, New Jersey, 07601, United States
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NYU Langone Medical Center
AVAILABLENew York, New York, 10017, United States
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Phoenix Childrens Hospital
AVAILABLEPhoenix, Arizona, 85015, United States
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Queensland Childrens Hospital
AVAILABLESouth Brisbane, Queensland, QLD 4101, Australia
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Randall Children's Hospital at Legacy Emanuel
AVAILABLEPortland, Oregon, 97227, United States
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Royal Manchester Children's Hospital - PPDS
AVAILABLEManchester, M13 9WL, United Kingdom
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Seattle Children's Hospital - PIN
AVAILABLESeattle, Washington, 98105, United States
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The Children's Hospital of Philadelphia
AVAILABLEPhiladelphia, Pennsylvania, 19104, United States
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The Cleveland Clinic Foundation
AVAILABLECleveland, Ohio, 44195, United States
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The Nemours Foundation
AVAILABLEWilmington, Delaware, 19803, United States
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The Regents of the University of California
AVAILABLEOakland, California, 94609, United States
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The University of North Carolina
AVAILABLEChapel Hill, North Carolina, 27514, United States
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UPMC Childrens Hospital of Pittsburgh
AVAILABLEPittsburgh, Pennsylvania, 15224, United States
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Vanderbilt Children's Hospital
AVAILABLENashville, Tennessee, 37232-7610, United States
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Washington University
AVAILABLEWashington, Missouri, 63130, United States
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Conditions
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